My Body Hit Pause — But I’m Learning to Press Play Again

My sister and I were home to celebrate my cousin’s recent marriage the weekend before Memorial Day weekend.  

We were scheduled to take a flight that Sunday night after the celebration, and we were waiting for our flight at the airport when suddenly, my head was pounding, and I was vomiting at a rate I’d never experienced before. My sister called my mom, and my mom asked what we had eaten. 

I knew it wasn’t the Huddle House, and in my mom’s gut, she knew it wasn’t the Huddle House, either. Only other possible answer? A shunt malfunction. 

Back in 2005, I had a shunt revision. Unfortunately, I went nearly blind in my left eye because of the damage caused by the increased intracranial pressure. Still, otherwise, I was young, and don’t remember having alarming symptoms — that would make my parents worry about my shunt. 

But this time, I made it to the Emergency Room and was taken back immediately. I was vomiting at a constant rate — I began to worry that I might aspirate if I closed my eyes even for a second. 

I knew — it was bad. From what I remember, the silence in the room was thick, almost suffocating. One by one, more medical staff came into my hospital room, actively trying to figure out what infection I had and how to treat it.

When I originally got to the ER, I wasn’t lucid the entire time. It felt like I was drifting into unconsciousness, and the pain was debilitating when I was “aware”. During a spell of consciousness, I talked to my cousin, an emergency medicine resident, and she said she would come back with books to read, if I was able to enjoy it. 

I knew if my care would involve surgery and intubation, the healing would take time. Intubating someone is a medical procedure where a tube is inserted in the trachea. I am someone with a tricky airway. I have had a trach when I was younger, and was cannulated again after a spinal fusion surgery that went horribly wrong. There’s scarring, and I have been made aware that my airway is “difficult”. Once it was confirmed that my shunt was indeed infected, we all agreed it would be best to have the anesthesiologist perform the intubation while I was awake and responsive. 

It worked. I was intubated successfully, and the surgery could be performed safely while I was sedated under general anesthesia. 

Having the ability to remain awake during intubation is preferred for difficult airways because the risk of oxygen deprivation is reduced. The idea behind allowing someone to remain awake while being intubated is to not jeopardize their airway considering the risk of airway obstruction is high. 

The surgical team removed my infected shunt, and now it was a waiting game to see how my body would respond without a shunt.

A few days after entering the hospital for treatment of my infected shunt, I asked the attending neurosurgeon physician at the Medical University of South Carolina the question that was keeping me up at night, every night ...."And, how much longer do I have to be here?". 

To some, that may sound wild, but I’m more concerned about resuming “life” rather than taking the time to heal. It might appear that my infection “wasn’t that bad” if that was my primary concern. A transdermal patch was replaced behind my ear every 12 hours, which helped keep the vomiting mostly at bay. But, every night, I had a good cry, and I wanted my life back, and having a medical emergency interrupted my ability to live. (And by live, I mean, have autonomy over my body, and the hospital white sheets felt suffocating, and a harsh reminder that I am captive to my medical condition — Pfeiffer’s syndrome.) 

After surgically removing my infected shunt, the doctor said with profound compassion, "It will take 10 days for the infection to clear, but I don’t believe you’ll need another shunt, though. Your output of cerebrospinal fluid right now is minimal.” I knew that too much cerebrospinal fluid was dangerous. I also knew the words coming out of his mouth would jinx me. I remember thinking, “Why did you say that out loud?” 

I remember looking at him, and I smiled softly, hoping he was correct. But, in my heart, I knew I would get another shunt. I had a sneaky suspicion it wouldn’t be another 10 days. It would be much longer. My headaches were alive and well, even with the help of the drain. I became dead quiet, vibrating with awareness that regardless, whether it’s 10 days, or I have to have another shunt placed, it’ll be quite the recovery that I never anticipated, much less 20 years later. I’m getting a new shunt now? 

Instantly, I wanted to burst into tears, but I waited for any medical staff to leave. There were plenty of times when defeat and frustration set in: moments when I had to be walked to the bathroom, having limited time outside my hospital bed, much less, outside. 

The infectious disease doctor came by and mentioned that my infection was “nasty”. The infection is called: Klebsiella Oxytoca. I remember her walking into my room to let me know the results of my tests had returned, and that she would speak with my local ophthalmologist, who saw me in February. It’s not uncommon for ophthalmologists to see evidence of a shunt malfunction because it affects eye pressure. 

My sister stayed by my side at the hospital most of the time. She had watched me almost die before her eyes, as a twin sister, one with Pfeiffer syndrome, too — she was trying to make sense of things, searching for assurance that I would eventually walk out of the hospital. 

My family and I all felt comfortable with my neurosurgeon. He treated me with a level of care that I have rarely experienced, and I will forever be thankful for the care he provided. 

I wanted to know I would be OK, but I wasn’t so sure. I wanted a promise, irrefutable evidence, and the neurosurgeon rubbed my back and said, “I will get you back to feeling better.” I was fortunate to be South Carolina, where I had plenty of visitors. No one made me feel less than for having my head shaved in two separate places, and no one was bothered by the drain coming from my head. I thought about it more than anyone who stopped by probably did. 

I have been home healing since my second surgery. I am entirely unwilling to accept that this will affect me long-term. I am actively working on healing, physically and emotionally. I’ll get there. Like I always do.

Frequently asked questions: 

What is a shunt? 

It is passage or tube that diverts fluid from one area of the body to another, often to relieve pressure or redirect flow. (If you have a craniofacial condition: generally, the shunt is placed in the head, and the tube is sent to your stomach.) 

How long does a shunt last? Will what happened to you happen to me? 

According to Google, it can last for varying lengths of time, though it generally doesn't last forever and may need revision (replacement of parts) or replacement over a person's lifetime. 

What infection did I have? 

Klebsiella Oxytoca

Can an infection with a shunt happen at any time? 

According to my neurosurgeon — an infection is far more probable within 6 months of placing a shunt.

What were the symptoms? Did I have them for a while? 

Sudden vomiting, throbbing headache, and double vision. (temporarily) 

I might have had some symptoms prior that may cause for concern, but I dismissed them entirely. 

Why didn’t you have a revision? 

I have had a revision before, but the infection this time infected my entire shunt. It was important to remove the entire shunt.